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The struggle of living with endometriosis

Erin Luyendyk has struggled with endometriosis since she was 13. She says many victims of the disease experience painful symptoms for years before a proper diagnosis is made.

March is Endometriosis Awareness Month. And among those who need to be most aware of the disease are physicians, says one sufferer.

Erin Luyendyk has struggled with endometriosis since she was 13. She says many victims of the disease experience painful symptoms for years before a proper diagnosis is made,

That’s what happened to Luyendyk.

“The average woman waits between eight and 11 years between the onset of symptoms and diagnosis,” she said.

She was 20 before she was diagnosed. Before then, she was told, among other things, that the pain she was experiencing was “normal.”

“I was told it was in my head, that I was on the wrong pill, that it was a maladjustment to being female, which is the most ridiculous thing ever,” Luyendyk said.

Endometriosis occurs when endometrial cells collect outside the uterus. Most often the cells appear in the pelvic area. Symptoms include extreme abdominal pain and infertility.

The disease strikes 10 per cent of reproductive-age women. Current research indicates it has multiple causes, with some factors that are genetically linked,

“I think there is still an issue with a delayed confirmed diagnosis,” Dr. Catherine Allaire, gynecologist and medical director for BC Women’s Centre for Pelvic Pain and Endometriosis, said. “The main issue is whether the symptoms get treated.”

Laparoscopy, which removes the endometrial cells through a few small incisions, is the definitive method of diagnosis and treatment. “The question is, Does every woman with pain need to have a laparoscopy immediately?” Allaire said. “The answer is no. Many women can be treated with medical management to help with their pain.”

Ablation, vaporization, or fulguration procedures are also sometimes used. These treatments cauterize rather than remove the lesion.

“There’s still some controversy over what is best, especially depending on the main symptom we’re treating, if it’s pain or infertility. Certainly if the lesions are deep, they probably should be excised.”

Excision is the standard of care Allaire uses at B.C. Women’s Centre.

Now 30, Luyendyk still suffers from endometriosis, even after several surgeries, including three laparoscopies. But she says she needs a kind of aggressive excision surgery she can only get in the U.S.

Luyendyk is now engaged in a struggle with the provincial government to have them pay for the surgery. The Medical Services Plan requires a letter from a medical specialist detailing the treatment options that have been explored and the medical necessity of the referral.

“With the B.C. government, they want me to keep having ineffective surgeries here and spend ridiculous amounts of money and have no quality of life versus paying a little more for one surgery that has an 80 per cent chance of curing me,” Luyendyk said.

Allaire says that surgeons at the Women’s Centre “perform the same treatments as are performed anywhere. All the excisions we do are very thorough and complete excisions of endometriosis.”

Luyendyk has a complicated case. Instead of pelvic endometriosis, the most common type, she has endometriosis on her abdominal wall, and may have it on her sciatic nerve. Both locations are rarely sites for endometriosis.

She is in constant pain, and suffers from low-grade fevers and nausea. “The pain is so bad, there are three days a month I can’t walk. My whole leg and hip area go numb. There’s constant shooting pain in addition to the pelvic pain, the abdominal wall pain, the joint pain.”

Synthetic hormones called progestins and the drug Lupron, which suppresses hormone production, are sometimes used to treat symptoms of the disease. But Luyendyk eschews hormone treatments. “They don’t work, and they have horrible side effects,” she said.

Her pain management options are minimal. “Because I’ve taken so many anti-inflammatories over the years I can’t take them anymore. I’m allergic to most narcotics.” A registered holistic nutritionist, Luyendyk said nutrition has been somewhat helpful for pain and for managing inflammation.

She became a nutritionist partly because of her disease. “I wanted to pursue medicine, but because I was so sick all the time, I wasn’t able to do that,” she said.

Luyendyk believes she needs the kind of aggressive excision surgery she can’t find up here. “I don’t have a choice. My quality of life is zero. For the last 17 years, my life has consisted of school and work, and collapsing in bed because I’m in so much pain. I’ve missed all of my teens and all of my twenties because of this disease.”

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